I am new to posting on the board. Thanks to those who have posted here and provided invaluable information. It has been a great resource since I started down this road.

Long story short - After feeling fatigued and lousy for more than a couple years, but never being able to get to the bottom of it with my doctors, I ended up in the ER in October of last year due to extensive bleeding and pain. Took about a month for them to fit in colonoscopy, and a mass was discovered. I had a rescission to remove a sigmoid colon adenocarcinoma at the beginning of December, 2017. Surgery ostensibly went well and I began Xeloda chemo in the middle of January to "mop up" whatever might be lingering behind.

I am wondering about the side effects anyone here has felt on chemo (Xeloda) and after surgery. Specifically, insomnia, loss of metal acuity and anxiety. I read some posts where people talk about the hand and foot syndrome, thinning hair, nausea. I have started to feel those effects here in the third two-week cycle.

But the things that have been bothering me the most are side effects that the doctors seem to shrug aside; an unnatural fatigue and mental haze that seems to get worse with each passing week. And despite feeling fatigued most of the day and trying to fight it with walks and light exercise, I can't sleep more than an hour or two a night. The doctors seemed to gloss over this as "usual anxiety" that comes with cancer, but I had bouts with insomnia before cancer, and this is substantially worse. Moreover, ever since the surgery, and especially since the start of chemo, I am just not mentally as sharp as I think I was prior. I find it incredibly disconcerting to drift off in the middle of conversations or forget what I was doing.

Anyone else have similar experiences, and if so, did it go away when the chemo ended?

Hi JNC,Sorry hear of your diagnosis. I'm a fellow stage 2 patient who relied on Xeloda for adjuvant treatment. I'm concerned that your physicians are not taking your insomnia and anxiety seriously. During treatment I took Ativan as needed for anxiety and nausea. I also had the effect of causing drowsiness. Seems like something like that could really help you out. Don't know the best way to go about broaching this with your physician, especially since they seem to be ignoring you. Maybe a fellow Colon Clubber has suggestions.

Sounds like you're already walking and exercising as much as tolerated. Good for you!. I found that to be one of the best was to cope. Another suggestion is to drink a lot of water to flush the bad crap out of your system. Lots and lots of water, like 3-4 liters a day.

5FU interacts with folic acid in common multivitamins and fortified foods, like bread. We ruthlessly eliminated folic acid, added 2tsb liver(spread) for natural folates and other nutrients for another oral 5FU drug. Then increased 5FU chemo 33-50% with fewer side effects.

Glutamine, IV vitamin C and PSK can offset many chemo effects; melatonin can aid sleep and immunity. Other supplements can help side effects and improve cancer inhibition too.

watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemomost of 2010 Life Extension recommendations and possibilities + more, some (much) higher

I'm sorry your doctors are not taking you seriously, maybe get a bit vocal. One of my neighbors is a Vietnam Vet who was suffering from PTST. He was being ignored at the VA hospital until he threw a MAJOR hissy fit in the waiting area. That got the attention of a psychiatrist who was in his office. That psychiatrist hauled my neighbor into his office and he started getting the medical attention he needed. I'm not advising get that vocal, but express your frustration.

I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

juliej wrote:I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

I was on 3,500 Xeloda + Radiation for Neo-Adjuvant Chemorad (before surgery), and I tolerated it well. It did a number on my red and white blood cell counts but I could work, run and play tennis through it.

I'm on Adjuvant right now with 4,000 mg and the symptoms that you mentioned. Add diarrhea into the bag as well. I'm waiting for an Oxaliplatin infusion and asked to reduce the dose from 80% to 75%. I also mentioned the arthritic feelings in my hands and we agreed to reduce the Xeloda to 3,500 mg. If you are having a really hard time, ask about reducing the dosage. I was in really bad shape after the second cycle of Oxaliplatin and we took an extra week off and lowered the dosage to 80% for the third and it was similar to the first (which was acceptable). The weather here has improved which should help a lot.

Doctors may be reluctant to drop the dosage but it's actually common if the patient can't tolerate the toxicity. It is not an exact science and research may be pointing to fewer cycles.

I fell down the stairs 10 days ago due to tiredness and rushing to empty the bag and I had an accident yesterday with a microwave oven (cut). So the affects on your brain can cause other problems as well and I don't think that you want to walk or drive like a zombie. Good luck with talking to your oncologist.

juliej wrote:I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

Hope this helps!Juliej

Thanks very much for the advice. My Onc suggested Ambien for sleep and if that doesn't help, we will try something else. Good to know that "chemo brain" is a legitimate issue - as you said, this is a "life changing event" and there has been an awful lot to process. Take care!

Just reading my chemo teaching pages from hospital today. It says Folic Acid may interact with Xeloda. I have been going through cupboards, reading labels and stocking up on flour, pasta, cereals that don't have folate. Pharmacist from insurance company gave me links to some studies about it working against chemo. Will follow up and share them.S

Real brands of pasta from Europe doesn't have it, not the brands the sound Italian but really made there. I am going to make my own bread, gives me an excuse to feel the house with amazing scents, spoil my husband. Most gluten free products don't add folic acid. Corn meal has it though. But there has to be an organic product. I got Bobs Redmill organic flour. Natural sources from food sources are okay, it's just the added folic acid or folate that bad.I will let you know bread name, going to market today.

Caat55 wrote:Real brands of pasta from Europe doesn't have it, not the brands the sound Italian but really made there. I am going to make my own bread, gives me an excuse to feel the house with amazing scents, spoil my husband. Most gluten free products don't add folic acid. Corn meal has it though. But there has to be an organic product. I got Bobs Redmill organic flour. Natural sources from food sources are okay, it's just the added folic acid or folate that bad.I will let you know bread name, going to market today.

Thank you, I appreciate it.

All purpose flour has folic acid added. Might need to start making our own. Too bad we got rid of the bread maker years ago. Time to start shopping again